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» I think I've developed vulvodynia?? Please help!
Yesterday at 9:10 pm by Necromeowncer

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:38 pm by Mel T

» New w/ Secondary Provoked Vestibuldynia
Sun Oct 22, 2017 3:47 am by Birdy

» Newly diagnosed
Sat Oct 21, 2017 9:50 pm by sarisbaris

» Prednisone Injections?
Wed Oct 18, 2017 5:07 am by sarisbaris

» Has anyone had continued success with gabapentin or Botox injections?
Wed Oct 18, 2017 4:47 am by sarisbaris

» Recent "Poke" Pain - So Confused/Losing My Mind
Wed Oct 18, 2017 2:37 am by sarisbaris

» What is Vulvodynia?
Tue Oct 17, 2017 11:57 pm by Jenjen

Mon Oct 16, 2017 2:22 am by Sagewoman

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1


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Post  ellle on Tue Jan 07, 2014 8:39 am

I'm 20 years old and living in Australia.

I was recently diagnosed with vulvodynia after several trips to the doctors and finally to a gynaecologist who put me on 10mg endep to start pain management.
I didn't realise at the time how much of an effect this would have on my life. My doctor sort of played it off as though it is incredibly common and easy to live with, but recently I am finding this to be false.
I've been in a relationship with my partner for over a year now and although he is incredibly supportive I find myself feeling guilty and useless in the relationship because we have virtuallly no sex life.
I'm going to have to go back to the doctors to have my pain medication increased as it has not helped in the slightest.

I need advice. A lot of it. I need tips on how to deal with the depression, the anxiousness and the pain!
What do you guys find works for you? What makes it worse.

Much love, elle x


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Re: Struggling

Post  zarli on Tue Jan 07, 2014 9:08 am

Hi Elle
I am also from Australia. I also started on 10 mg amil but you usually won't get any relief until you get up to 25/30mg. I have heard of a lot of people who gave up on it because they didn't up their dose and couldn't handle the tiredness but persevere if you can and I am sure you will get relief. My pain was constant and only mildly irritated with sex so I am alittle different to you. My pain was debilitating and Amiltriptyline saved my life I took 35mg for 4 years with only flare ups if I sat for too long or wore jeans or tight pants etc. I made the mistake of not trying to find out the cause of my V and took it for granted the meds would get rid of it. But when I tried to wean off the Amil my V came back with a vengeance. It is IMPORTANT to remember we are all different and different things will work for different people. I am a lot older than you and had a very extremely stressful situation in my life which made my V worse or maybe even created it to begin with.

Please don't get scared or frightened because your Vulvodynia could disappear over night. Remember a lot of people who get cured don't go on these forums any more. I think you need to get pain relief FIRST and then have a good look at your life style etc for what may have triggered it for you.
I know of a great vulva pain specialist in Melbourne that I would highly recommend you to try, but I don't know where your from.
I am here for you, you are not alone on this journey.
Best Wishes Zarli


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I'm with you

Post  907hopeful on Wed Jan 08, 2014 5:59 am

Elle - I am in the same boat as you. This is a recent problem for me and I still haven't had my diagnosis confirmed - I think it is a skin issue turned into vulvodynia. Still searching for a dr that will work with me. It's hard to stay positive and I think reading on the internet makes it even harder. There are some people out there that do a great job of providing support and giving you the reassurance that you are not the only one going through this, but it can be very depressing to read about the severe cases that are going years w/ no relief. Unfortunately most of the people posting things online are those still struggling. I am really trying to limit my online searching to only medical websites and articles otherwise my sanity is going to suffer even more than it already has! I am sure I will continue to check back here , but I need to work on building my mental strength back up to tackle this issue with all I have. I have been letting the negativity of my situation bring me down too much! Best wishes to you Elle. Try your best to stay positive and I will do the same.


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Re: Struggling

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